BiographyWill was born 8 days early, on a very snowy day, weighing 9lb 12oz. He was a happy baby and a beautiful brother for his sisters, Lily and Emily.
He met his milestones before or even ahead of schedule, smiling, sitting-up, rolling over, crawling, babbling, cruising and then he had his first seizure at 8 months. This was swiftly followed 2 days later by another and 2 weeks later by another and so the pattern started. Slight temperature increases and brewing illnesses would trigger seizures. Eventually Will was diagnosed with Dravet Syndrome the day before his 2nd birthday. This had followed 16 months of seizures and blue light ambulance trips to hospital with HDU and PICU stays the norm for our family.
Following his diagnosis we realised the future we had hoped for Will was going to be very different to the reality. Although things are far from bleak, he will never be independent and will always need care. The seizures, despite being on high doses of multiple medications, are not controlled. ADHD and autistic behaviours are extremely challenging and exhausting to manage and every trip out or holiday has to be planned with military precision, especially the distance and time to the nearest hospital!
Although he has his challenges his resilience is amazing! He's been discharged from hospital one day and back to school the next! He is an affectionate and caring boy who loves to ride his bike and scooter, climb walls, jump in and splash about in the swimming pool and ride the slides at Center Parcs! He is funny and witty and loves to laugh.
We don't know what the future holds, but we do know that whatever it is Will the Warrior will continue to bounce back, like the rubber ball that he is!
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